We recently had the chance to speak with Alice, a current PICC line patient and Care+Wear customer. Her attitude was contagious and after hearing her story and perspective (and with her permission) we wanted to share it with the rest of our community. We hope you find her story as inspiring and helpful as we did!
Q: How long have you been living with your current PICC line?
A: My current line was inserted in late January after I had a major flare and I still have it, so about two and a half months.
Q: How has living with a PICC line been?
A: It's given me my life back but it's still a mixed bag. Due to my POTS syndrome, my autonomic system doesn't regulate my electrolytes properly, so I'm chronically dehydrated. The PICC allows me to run a liter or two a day of fluids at home. There are many benefits to it, the main one being I don't have to spend hours a day at a hospital having them run fluids for me, and I don't have to have nurses search for a good vein over and over again. I have a genetic connective tissue disorder called Ehlers-Danlos Syndrome (which causes the POTS) and I'm an incredibly hard stick. I also vastly prefer the PICC over a PORT, which I had for over three years, because it's much easier to access a PICC line, and there's no needle involved. There are also a lot of drawbacks. I can't swim, or even submerge my arm in the bathtub. I have to be impeccable with hygiene and sterilization because of the very high risk of infection. It makes it pretty impossible to exercise that arm as well, so I always lose some muscle mass while I have it in. Housework is difficult, especially heavy cleaning like the bathroom and dishes. I always have to be conscious of keeping dirty water away from the dressing, and moving my arm around too much causes the PICC to slowly work it's way back out of my arm, which means eventually I'll probably have to have a new one put in.
Q: What does the PICC line allow you to still do?
A: The closest medical facility to me is a good 30 minutes away. Before I had a PICC put in, when I needed hydration I would either have to drive myself (which I can't do on dizzy days, when I need the fluids the most) or beg a ride from someone. It took a whole day, and was exhausting. Now I get up, take my kid to school, come home, get into bed, hook my line up and surf the internet for an hour or two. I can go sit at the beach with my family, even if I can't get in the water. It's given me flexibility. I've also traveled to the mainland from Hawaii as well as to Mexico with my PICC. There is protocol you have to follow to travel on planes with medical supplies, but it really hasn't been that much of a hassle. Before my PICC, when I would travel I would have to take at least a half-day out of my vacation every few days to find a facility that could run fluids for me, which isn't easy at all in a country where you don't speak the language or they have a different health care system.
Q: What do you wish you had known before getting your PICC line?
A: I wish I'd known about the Care+Wear PICC cover. This is my second round with a PICC line, and last time I used the white mesh sleeves that the medical supply company sent with my orders. They were itchy, uncomfortable, stretched out within minutes and didn't hold the extension line securely so my dressings were always becoming irritated. I would catch the mesh on things and accidentally yank the PICC line out a notch or two a few times a week. The Care+Wear cover is tight enough that everything stays in place, especially when I'm asleep. I also had no idea that it was possible to run fluids at home if your doctor and insurance company approve it, and a nurse trains you, so for the first year I had a PICC (and the whole time I had a PORT) I was going to the hospital at least two times a week.
Q: How have people around you reacted to your PICC line?
A: The people I'm close to are very happy for me. These are the people who gave me rides to the hospital, who pick my daughter up when I'm too wiped to drive, and who understand the ins and outs of living with a chronic, incurable illness. Neighbors and people I don't see regularly, and people who are uncomfortable with medical things in general are pretty obviously disturbed by it, but I've only had one person blurt out, “That's gross.” in years. I get a lot of double-takes and looks of pity in public. The kids at my daughter's elementary school are the best- they'll just come right out and ask what's that thing in my arm. Depending on my mood and the kid I either take the time to explain about it, and how it helps me, or I tell them I'm part Cyborg. The Care+Wear PICC cover is much less obvious than wearing the traditional mesh sleeve.
Q: What's the hardest part about having a PICC line?
A: My previous PICC line decided to pull out way too far when I was on vacation in Mexico. I called my doctor, who called my home nurse, who talked me through pulling it in a hotel room. It was pretty gnarly. Having them put in isn't a pleasant thing either- lidocaine doesn't work for me because of my EDS, and it's sore for weeks after.
Q: What are some good online resources to help educate others and yourself on PICC lines?
Twitter and online support groups. Twitter is fantastic for speaking with younger, active people who live pretty well with them.
Q: Which was your favorite Care+Wear PICC line cover color?
I like the plain black one for every day.
Q: What was your favorite thing about wearing Care+Wear's PICC line cover?
I love the security of it, and the mesh window allows a bit of expansion room so I can ball up the extension line and cap so it's not falling out all over the place. It's also very comfortable, and the material doesn't irritate my skin.
For this and more on Alice, follow her on Twitter @allylovespono!
Thank you Alice for sharing your story with others!